#katiesmithsfightclub

[katiescancerjourney]

Scares, July+ 2022

I initially was going to write about each scare in detail, but I have been rather overwhelmed lately and do not want to feel like keep up with my blog is homework, which frankly, it kind of does right now. Homework I gave to myself! lol. Maybe one day I'll lay each one out in their own post, but for now, this is a condensed version.

The last couple of months have been difficult, to put it lightly. Starting with anaphylactic shock which was horrifying, then my sacrum pain increasing to the point where radiation was an absolutely necessary next step. There are lost of side effects connected to radiation but the standout one I learned about was the potential of going into menopause… at the age of 34… putting the nail in the coffin for child birth. I was gutted. Luckily after many fights with my insurance, I was approved for proton radiation which lowers those chances. But still, well, fuck you sacrum tumor.

Due to the pain, I had to go on a 24/7 opioid regiment that has introduced many unwanted side effects, the most awful being, often not feeling like myself. I had emergency scans, procedures and exams due to extreme bloating in my abdomen, an ultrasound for swelling in my foot and a blood transfusion because of low hemoglobin levels. Next I needed a pelvic scan and exam for the extreme nerve pain that has taken over my rectum and genitals, which could be referred pain from my sacrum tumor, or could be a whole new issue to add to the pile. I’ve needed to change and increase my meds 3 times to keep up with the relentless increasing pain, making my daily pill count to almost 40. All the while, my liver enzymes have been shooting up week after week, excluding me from chemo and resulting in the need for liver duct stents.

And after going through all of that, not having 1 full week of peace for months, now, when I look in the mirror and see yellow eyes staring back at me, and I see dark urine every time I pee, and it’s impossible not to go there, to not think, for maybe the first time since this all began, that I might not make it.

After my last appointment with my main oncologist, I came out of her office, sat down in the waiting room and leaned back against the wall. I started to tear up as I fidgeted on hemorrhoid pillow, which I literally cannot sit without anymore. My dad asked if I wanted to go lay down on the couch that was free and I said yes. I walked over to the couch, curled up in the fetal position, brought my arms up over my face and sobbed. Not 30 seconds later I felt him sit down next to me and he started rubbing my head. I sobbed and calmed down and sobbed and calmed down, over and over. When I finally brought my arms down and looked up, Dad and Kim's eyes looked like mine, tired and sad. So yeah, I think that's where we're all at right now.

I got some pretty incredible advice from my support group last night which was to stop and look around at everything I have. To see that I’m at one of the best hospitals in the world, my doctor is a fucking legend, I’m getting an amazing type of radiation that is very difficult to get approved and I’m already set up for the liver duct procedure. I’m as ready as anyone could be. They said I need to go on autopilot for a little while. It’s time to trust the doctors, trust the plan, take a deep breath, and let it all go. Autopilot here I come.

[katiescancerjourney]

New Chemo Side Effects - TMI

I’d like to put out a warning that this post has to to with my vagina and butthole and a little bit of sex (not butthole sex, I see how that could be misleading) but it’s all completely medical and the point of this blog is to show you what I’m going through and hopefully help other people dealing with the same thing so I’m putting it all out there with zero regrets. But I guess if you’re my dad, maybe skip this one?

The new chemo I’m on, Erbitux, also known as Cetuximab, is super drying. It dries out your whole body leading to acne and rashes and cuts similar to paper cuts. It’s a real fucking blast. So per the warning, over the last month I’ve experienced 20 new white heads a day around my chin and nose, alligator skin bleeding nail beds, bleeding pores after shaving, etc. What I didn’t expect was for all of my private parts to start dying.

Weeks ago I was at a wedding and I saw so much blood in the toilet that I thought I got my period, so I borrowed a tampon from a friend and went about my day, no biggy. When I took the tampon out later there was no blood. Ok that’s strange but my period has been all over the place on chemo so I didn’t think much about it. I soon realized that I was bleeding with bowel movements. Since being diagnosed I started getting hemorrhoids (also a fucking blast) so I figured that one was acting up and again, no biggy, I went about my day. Unfortunately weeks later, the bleeding had not stopped and the pain was increasing.

Now on to my vagina. I had sex recently (go me!) and I noticed a week or so later that my vagina was bothering me. To be honest, it wasn’t just my vagina but isolated completely to my clitoris. It was really sore, hurt to go to the bathroom and wipe, etc. I started to run through all potential reasons, like was I masturbating too much (hey, it happens, I live alone during a pandemic, it gets real boring), had my cancer spread to my vulva (it’s a real thing), did I get an STD? Let me say that I don’t date at all or have sex often and if I was going to get an STD like the one time this year I had fun with everything else I’m dealing with, that would be the ultimate disrespect!!! Luckily that was not the case.

After getting a GYN exam and a finger up my butt by a proctologist (you may think that someone with colon cancer is used to that by now but it was my first appointment when anyone was inspecting that area and I was not under anesthesia) the doctors determined that this chemo is so drying that it’s cutting up all of my special places. I have a fissure on my rectum and a small laceration on my clitoris. Are. You. Fucking. Kidding. Me. The advice was to get a bidet attachment to my toilet so I wipe less often, to apply aquaphor after going to the bathroom every time, and of course, use all of the lube in the world whenever you have fun times. 

Chemo sucks, we all know this. It makes you sick and fatigued and generally feel like shit, but it’s these weird and seemingly random side effects that annoy me the most and shock me every time. For anyone who’s seen The Good Place, I imagine a small council sitting around a conference room table looking at all of the different types of chemo and deciding which bizarre side effects they would find amusing to add to each one. 

I’ve had first bite syndrome where your jaw painfully locks up every time you take a first bite of something, only to go away immediately upon the second bite. I’ve had sensitivity to cold where slightly above room temperature water feels like shards of ice sliding down your throat. But I gotta say… a paper cut on my clit really takes the cake. 

[katiescancerjourney]

Whac-A-Mole

One day Kim and I were sitting in the MSK waiting room and we started talking to a guy who said something like “having cancer is like playing whac-a-mole” and I think about this almost everyday. Something pops up and you knock it down and then something else pops up, and rinse and repeat. 

I hope to walk away from this game with a huge ass teddy bear. 

[katiescancerjourney]

Surgery + Recovery, January 2022

On January 5th I had surgery to remove the 15 tumors occupying my liver. The surgeon and team did a phenomenal job, removing every single one. He also did a scan while I was on the table and saw no activity in the remaining cancerous lymph node and bone met I had lingering. Post surgery, the assessment was - I did not have any active cancer left. Of course, this news was incredibly exciting, but more for family and friends than me. I had a moment of shock and posted on Instagram (which in hindsight was pre-mature) but I quickly settled into a place of skepticism and frustration. Being less than 1 day post surgery, I felt terrible and was not able to really feel the joy of the news, not to mention I figured I’d get post chemo surgery which would absolutely suck, as chemo always does.

Recovery was (and still is) tough. The pain sucks, the scar tissue sucks and mentally, I haven’t been in a great place. However there have been a few positives. The physical scar has been a bit easier to handle than the last one. It’s not a long straight line so it pulls less often. It seems to be healing a little bit faster and I’m officially off pain meds. In the hospital, because this wasn’t my first rodeo, I knew which pain meds worked best for me and was able to transition from the epidural to oral pain meds with so much less suffering, thank the love of all that is holy. Unfortunately, constipation came so I stopped taking the opioids as soon as possible after leaving the hospital. I probably dealt with more pain than necessary, only taking Motrin, but in my opinion, it was the lesser evil. Constipation has truly been some of the worst moments of my year battle cancer so far. 

As warned, my energy and appetite have taken quite a hit. I remember last time, 2 1/2 weeks after surgery, I went to brunch with Ashley. I’m now almost 4 weeks out and I wouldn’t go to brunch unless Ryan Reynolds was our server. I also continued the trend of referred neck pain, meaning whenever my internal organs are dealing with trauma, my body shoots pain up the right side of my neck. It quickly became far worst than my abdomen and scar pain. My surgeon said that the majority of action with my liver recuperating would happen 3-4 weeks post surgery and my neck would start to feel better and sure enough, he was right. 

2 weeks after surgery I got a scan to confirm how well everything went. My hope was this scan was going to reiterate that there was nothing active left and I’d be on the track to remission. Unfortunately, that was far from what happened. My mom and I were about 20 minutes from MSK, heading to an appointment, when I decided to check if the scan had come into my portal. I opened it and immediately went to “lungs.” It’s something I’ve always done. It’s always been a place of fear for me and I always check it first. Sure enough it said I had 2 nodules and it had metastasized. I wasn’t shocked per say but I felt such a deep pain, I couldn’t say anything. Not until my mom had parked and we were sitting in the waiting room 30 minutes later did I tell her what I had read. 

It’s still hard to put into words the disappointment, fear and sadness that this news has caused me. The first 3 days I was an absolute mess, rightfully so, but luckily my neck pain started to go away on day 4 and it’s amazing what that can do for your mood. Hats off to anyone who deals with chronic pain, I don’t know how you do it. Without the neck pain I was able to get enough relief that I could picked myself back up. I came up to the lake for a week and was able to visit with so many people I love and things really turned around for me mentally. 

I feel very compelled to use this space to say thank you to my parents. My dad took me to surgery and sat with me all day every day I was in the hospital. Then my mom picked me up when I was discharged and took care of me the week after. Of course they wouldn’t have it any other way but I am still so appreciative. I also need to say thank you to my best friend Melanie. She has stepped up for me this month in countless ways, sending green juices that I need to drink, visiting, calling, texting and just doing things without me asking. People always say “let me know if I can help in any way! Call me if you ever want to talk!” and I truly truly appreciate it, but I often don’t know what to ask for or are too down in the dumps to initiate a call. Mel just anticipates needs and makes it happen. So she deserves the biggest shout-out in the world. Thank you for being my person. 

Well, back to my stupid cancer, my liver is clean, the lymph node didn’t even show up on the last scan and the bone met in my sacrum hasn’t grown. I’m in a good place to take this lung cancer on and I’m starting a new immunotherapy called Erbitux on 2/2, same schedule as my other chemo, every other Wednesday to Friday. It’s time for round 2 and I believe I’m ready.

[katiescancerjourney]

This is a speech I did for the Red Door Community in NYC, sharing a bit of my story and speaking to the value of support groups.

Thanks for watching!

[katiescancerjourney]

Pity

I’ve never really understood the negative connotation attached to pity. You constantly hear phrases like “I don’t want to be pitied” or “I won’t want people to feel sorry for me” and I’ve always thought, “why not?” The definition of pity is “the feeling of sorrow and compassion caused by the suffering and misfortunes of others” and that seems ok to me. 

Pre cancer, my biggest complaint was being single. Almost all of my friends and siblings are married and having children and doing things I wish I was doing. If they felt pity that I hadn’t found my life partner yet, that was totally fine, in fact, it was exactly what I was asking for. I would literally be complaining about it to their faces so it was a natural reaction for them to have. I still had a wonderful, fulfilling life and being single didn’t define me, but yes, it was a bummer going on endless shitty Hinge dates and I appreciated when happily married people were honest and said, “yeah that sucks.” 

Now having cancer, I would never feel bad or weak or less than if anyone felt sorry for me. How could you not? Fuck, I’m sorry for me! This sucks! This is an absolutely horrifying thing for a person to go through! 

Basically all I’m trying to say is, my pity party is poppin’ and you’re all invited. 

[katiescancerjourney]

[katiescancerjourney]

Anaphylactic Shock, 6/15/22

When I started back on FOLFOX, they said that you can develop an allergy to the main chemo in the cocktail, oxaliplatin - the one that gives you the shitty side effects like cold sensitivity, etc. So as a part of your pre-med drips, they add a healthy dose of Benadryl. It’s pretty awful as you get a drip of steroids right before and the combo is like being on drugs with none of the good parts. I always try to be one with the Benadryl and sleep through the rest of the drips.

I had noticed that whenever the nurses would start the oxaliplatin I would get an itch in my throat but it always went away and I figured that the Benadryl was doing it’s job and went back to sleep. For some reason, this round, my 6th round, I decided to let the nurses know that I always feel that little itch. They definitely seemed annoyed that I hadn’t mentioned this before, totally fair, and I promised to share if it happened again. 

I don’t know why, but I just knew in my gut that this time was going to be the time it didn’t go away.

Sure enough, a few minutes into the oxali drip, I sat up in my chair with shooting pain up and down my back. I probably looked like I was having a seizure as my body convulsed every second to the pain and I couldn’t keep my head up. The nurses ran in, took out my oxali line, pushed anti-nausea meds and more Benadryl and called for an NP. I started dry heaving and went into rigors. I was shaking and dripping sweat and my throat felt fuzzy and foreign, like it wasn’t a part of my body. However, I could breath in and out of my nose and I knew that if I remained calm and focused on my breathing, the meds would kick in in a few minutes and things would be fine. They had an epipen and push of pain meds ready to rock but I asked them to wait because I felt so fucked up from the Benadryl, I couldn’t imagine putting more medicine in me. Sure enough, a few minutes later, sweet relief. I couldn’t really talk and had no motor functions at that point so the nurses let me sleep if off. They woke me up an hour later and I said I was ready to get the fuck home. They were so freaking sweet, even offered to run across the street to Starbucks so I didn’t fall asleep in the Uber home but I felt confident I could get home fine. I did, and spent the rest of the day in bed, loopy as all get out, trying to take in everything that had just happened to me.

As FOLFOX is still such a good chemo, they want to try again, but this time, give me the drip over 8+ hours so see if only little bits at a time will prevent another allergic reaction. 

It’s funny, at first I was so bummed, like damn, I have to be at the treatment center for over 10 hours to get all my drips now? That sucks! I called my friend Sarah who had also had the same reaction to commiserate and whatnot and started to complain about the longer drip and she said “oh wow, you’re so lucky! I wanted to try the longer drip but my side effects were too bad at that point and they wouldn’t allow it” and then I realized, I’m lucky I get to try this bad ass chemo again. Sarah never fails to show me the bright side, like ever. 

[katiescancerjourney]

FOLFOX Round 2 + Scans, 5/19/22

My second go with FOLFOX has been surprisingly different to the first. Last year, I would be super sick on Wednesday and slowly get better. By Saturday I could hang out with friends (albeit not rage till dawn) but go out and have fun for a good chunk of the day. This time, I’m don’t feel great but not too terrible on Wednesday and then it get’s worst each day. I need to sleep non stop, the fatigue is outrageous. On Saturday and Sunday I miiiiiiight be able to see a friend but I need to be driven there and home to conserve all energy and I give up pretty quickly after arriving. It may not sound worth it but I believe getting out of my apt is always good for me. 

My last round was exponentially worse due to my hemoglobin levels being so low. I had to add an iron drip to my treatment. If you’ve never seen an iron drip, it’s blood red and looks pretty creepy. Apparently it can really magnify your side effects, as it makes you nauseous, fatigued, etc. I really struggled this round physically and mentally and spent a couple days in deep pity party mode, sobbing off and on, and in general feeling so sad about my life. As hard as these days are on me, and they are, I sincerely hate them, they’re very necessary and help me shed a lot of emotional weight. By day 5 I was feeling much lighter and although I didn’t have the energy for much, my neighbor and I went out for coffee on our block. He’s been the best, helping me with groceries, deliveries, etc. he’s become one of my favorite people.

I had scans on May 19th and like we thought, FOLFOX worked its magic again. Nothing huge, but some shrinkage here and there, no growth or spreading. Unfortunately my liver is still showing some suspicious activity, it has ever since my surgery, so I’ve basically told myself it’s already back in my liver. Any time I’ve had suspicious activity, it’s become cancer so I’m setting my expectations low, and hey, if that’s not what it turns out to be, fucking awesome.

[katiescancerjourney]

Scan Results, 3/24/22

I got scans after 4 rounds (2 months) of the new chemo Erbitux, also known as Cetuximab, and unfortunately things grew and spread. That fancy, expensive yacht chemo as I called it and I did not decide to be friends. It made me miserable and didn’t even help me out, what a dick.

Scans showed my lung tumors grew a little bit and the sacrum tumor grew a lot a bit. There were also new cancerous lymph nodes in my abdomen, esophagus and clavicle. 

I normally prefer to grieve on my own but something about this scan pushed me to reach out to Anna who lives nearby. We both had to run a few errands so we decided to meet by the City Point mall. As I was waiting in line to return, I saw her walk into the store and promptly walk out. My confusion only lasted a second as my phone started vibrating. She had just received a text from a friend she spent the weekend with saying she was directly exposed to COVID. Obviously no ones fault at all, but it was a punch to the gut. The one time I reach out because I really needed some in person support and this shit happens. When I left the store 5 minutes later, Anna was standing there. I started crying and she started crying and I put my hand over my face and we stayed like that for a minute. Then I felt a tap against my sneaker and I looked down to see Anna’s shoe on mine. What a pathetic scene, 2 girls leaning against the store window, standing 6 feet apart, crying, with legs stretched out so our shoes could touch. At least this got us laughing.

I got in an Uber home and Melanie called saying Anna had just explained to her what happened and she was coming from Philly. I said “don’t be silly, you don’t need to drive up here, I’m ok” but Mel basically told me to fuck off.

Friends are the best.

Next appointment I asked if I could go back on FOLFOX, the first chemo I was on a year ago. We know it works for me and I had had enough time off of it that maybe my body could handle it again. The answer was yes and the next plan was in place.

[katiescancerjourney]

I am not a religious or spiritual person. I don’t have any strong beliefs in higher powers or the after life. I’m also not oppose to any of it. Who am I to say what is real or what isn’t? However, I do respect everyone else’s beliefs and feel if they feel strongly about them, then I do too, through them. If that makes any sense?

Today my friend Elizabeth texted and said she has been mediating a lot recently and her late grandmother, who was a huge and beloved figure in her life, comes to her sometimes and tells her things. She said that this could all be BS and it would not offend her in the slightest if I was to disregard what she was about to say but Estelle sent her a message that needed to be shared with me. 

She said “My grandmother told me that you’re going to make it through this even though she knows you’re often afraid. She kept saying “you’re on a strong mission to survive” and that it’s not your time to go. She had a specific vision of you working with children later in your life that have had a similar experience to what you’re having now and that it will be your life’s work. She kept saying to tell you that your fear, although she knows it’s very hard to avoid, is not helping you and is blocking your body’s energy to heal. She kept saying to wake up every day and try to envision yourself surrounded in positive golden light, like a protective bubble. You will be OK.”

This was a wonderful thing to hear. The message gave me hope and strength, which is always needed. 

It gets a little bit more interesting, maybe.

My own grandmother Polly was diagnosed with MS and was in a wheelchair for the majority of her life. She never complained and brought so much joy. She’s been a guiding light for me since my own diagnosis. 

More backstory (lol). A couple weeks ago, Melanie and I were watching the Great British Bake Show and commented on one the contestants hair scarves and how cute it looked and how we wanted to try it out ourselves, I have kept a few of grammy’s scarves for years, having never worn them, ever, not really knowing what to do with them, but keeping them around because they are beautiful and remind me of her (*cough* I’m also a hoarder *cough*). For whatever reason, this morning I decided to dig deep in my closet and pull out one of these scarves and put it in my hair, using it for the first time ever. Sure enough, Elizabeth texted a few hours later.

Now, who knows what any of this means but Elizabeth said that maybe our grandmothers are chatting somewhere and I’d like to think thats true. And if not, it was a lovely day to remember some special ladies, Estelle and Polly. 

[katiescancerjourney]

Liver Surgery news

2 days after I learned about the potential spread to my bones, I received a phone call at 8:30 am. 

“Hi, are you able to speak to the doctor?” I shot out of bed. Holy shit, she’s calling me? I must be dying, ha.

I learned that the surgical board said my liver was operable. This was news I didn’t expect to hear for a long time, if ever. I called and texted and shared the good news, feeling so much joy that I was able to say something really positive after the bone thing. Kim came into the kitchen hours later, having not seen my text to the family and I got to tell her in person and watch her face. It was awesome. I lived in the excitement for a couple days and then all sorts of other feelings crept in. Concern that I’m not really ready, that maybe I need more chemo first to shrink everything further and make it all safer, fear of having another surgery, fear of not having another surgery, that maybe this was just a thought and not yet actionable.

On 12/6 I met with the surgeon. It was an appointment full of mixed news. 

Let’s start with the bad, you always start with the bad. First and foremost, this surgery is going to be harder than my last in every category. It’s much trickier, there is more room for complications and there will be longer and more difficult recovery period. I may not get my energy or an appetite back for months. They cannot do it laparoscopically so they’ll be opening my full incision again. As Roy Kent would say “faaaaaaaaaaaack.” 

The good news is I’m one of the youngest and healthiest patients the doc said he normally works on, this is a standard procedure for him and he has a great success rate. The doctor and nurse practitioner also stressed how amazed they were at my progress in such a short amount of time. Apparently the initial scan of my liver was bleak (15+ tumors) and now its operable due to a surprising amount of shrinkage. Oh chemo, the ultimate frenemey. Today you are not my enemy at all and only my friend.

There was a lot of medical mumbo jumbo discussed as well, which as always, should never be taken here as bible. If interested to learn more, do your own research, talk to a doctor, whatever, literally everything I’m saying here could be incorrect. He let me know why this surgery is particularly tricky - I have a unique way blood flows into my liver and one of my tumors is sitting right on it. I also have biliary ductal dilation that could cause leakage that would require many more procedures post surgery and from reading in between the lines is a challenging complication to work with. There are still a ton of tumors and from scans alone they don’t know how they are going to get rid of them all. There are 3 different types of treatment - cutting, ablation and radiation. The plan is to open me up, locate every tumor, assess each one, one at a time and decide which technique they are going to use. Sometimes I take myself out of the situation and focus on how incredible medicine is. If you’re interested in that as well, give me a call and I can tell you about it all in much more detail.

Well folks, we’re scheduled for January 5th. I wish I could say I was right back in excited mode but I’m not. Now I’m scared. I’m really scared. I’m scared they’ll open me up and realize it’s more challenging than they thought and there isn’t much they can do. I’m scared it will take multiple surgeries, or that I’ll have horrible complications. I’m scared of things best not to mention. Even best case scenario, I have to go through something again that included some of the worst days of my life. But… I could also be a huge step close to being cancer free that Wednesday night, which would be pretty fucking amazing.

So I guess I’m getting a little excited again.  

[katiescancerjourney]

Big Update, 4/30/21

I got my scans back and everything is shrinking!!! SHRINK SHRINK ZAP ZAP BITCH!!!!! 

Due to the chemo doing its job like a champ, I am already ready for surgery on Wednesday, May 5th. Please have a margarita for me!!

Surgery will include - 

Taking out the tumor on my colon

Taking out the lymph nodes where my cancer spread

Putting in a pump that will shoot chemo directly to my liver

Taking out my gallbladder because it cannot handle the chemo from the pump. Who needs a gallbladder anyways? Not me, that’s who!

I learned some really interesting (and a little scary) things about the pump. Apparently it’s a 1 time thing. Once it’s out, you cannot have another one put back in later if cancer comes back (no thanks homie, this was a 1 time stay at casa de Katie’s body) so once you’re ruled “cancer free” they won’t take the pump out for at least 2 years, just in case. WOAH.

The pump will unfortunately be pretty noticeable. It’s sewn in between my skin and abdomen muscles so you’ll be able to see a nice hockey puck shape on my tummy. I will also have a big scar because this is not a laparoscopic procedure so I guess Hot Girl Summer will have to include scars and hardware :)

I’ll probably be in the hospital for 4 days and then will recover at mom and Lance’s house. My 4 story walk-up apt will not be my friend for a few weeks.

Things I cannot do while the pump is a part of me - 

No heating pad (no biggy)

Not hot baths or hot tubs (booooooo)

No running (I hate running)

No jumping a lot. The doc specifically said I cannot do burpees (hahahahaha wow real bummer there)

No helicopters (uh, how tf will I get to the Hamptons?)

No private jets (uh, how tf will I get anywhere?!?!?!?!?) + (commercial airlines are ok because they have strict cabin pressure regulations )

Well, that’s basically it! I feel incredibly lucky to have had a good response to chemo and to be taking a big step in this battle so soon. I cannot thank my friends and family enough for the amount of support and love they have sent my way. I am the luckiest unlucky girl.

[katiescancerjourney]

October + Chemo, 11/10/21

October was a tough month. In the 2 week cycle in which I live my life, I know the first 5 days (3 of chemo and 2 of Neulasta bone pain) are definite, but the 9 days that follow tend to get better and better. Unfortunately those 9 days were often not better and better. 

I was having really bad heartburn, a lot of pain under my left breast, left side, my back and even sometimes my left arm, exacerbated by eating too much in 1 sitting. And by eating too much I mean a normal amount of food. Chelsea said it best “you never know which bite is going to be the bite that puts you over the edge and ruins the next 3-20 hours of your life.” My back was giving me a lot of trouble too, which let’s face it, could be regular side effects of aging lol.  Feeling physically shitty led to feeling mentally shitty. I figured getting chemo for 8 months now was taking it’s toll on my body and it was really crushing my spirit. I hated being out to dinner with friends on my off weeks when I was supposed to be feeling normal and thinking “god I cant wait to get home to lay down.”

Well, I found out the medicine I have to drink 4 times a day that coats my stomach was blocking my other meds from absorbing and I have to take the pills and syrup hours apart. Makes perfect sense, but damn I wish I knew earlier. Aside from the back pain, I’m definitely seeing an improvement now that I’m taking my meds correctly. Fast forward to today.  Long story short (ha, good fucking luck), I have a gala tomorrow and I asked my team to push chemo back 1 week because I don’t want to go with a needle sticking out of my chest. They gave me so much push back on the phone yesterday without any specific reason and I told myself, hey, if my health is at risk, I’ll get the chemo, but if they don’t say anything like that and simply don’t want to reschedule, I’m standing my ground and not getting it. Simple as that. 

Today I’m getting my blood drawn and the nurse asked “why aren’t you getting it drawn from your port?” and I said “well, I’m dressing for the job you want, ya know what I mean? I dont want chemo today, so I dont want to access my port and put that out into the world. I’m doing it from the arm and closing up shop.” He starts laughing and asks why I don’t want chemo and I go through the story, that I have an event tomorrow and I asked to push my chemo back a week but my doctor is giving me a hard time and he said “well it sounds like that should be ok.” Next he looks at my schedule, sees my doctor’s name and says “Ooooh shit, I see what you mean now” and starts laughing again. I said “Right? See what I mean now? I can’t go into that appointment with my port tapped, I need to show up with this arm bandaid on and present a solid front” and he responded “omg to be a fly on the wall in your appointment later.”

Sure enough, it worked! No chemo today! I’ll get both pump and systemic on the 17th and its no big deal.

Next I’m in the chemo waiting room because I need to get some fluid in my pump to hold me over till next week and he sees me, walks over and said "so......" I said "I did it!!!!!" He said “ yeah girl” and we high-fived and it was a moment that brought me so much joy.

Another interesting encounter today was when this beautiful woman just came up to me and said "are you Katherine?" I said yes and she said "You dont know me but my husband and I see you here all the time and I just can’t believe someone so young is going through this and I keep wanting to say something but I don’t want to make your uncomfortable but well hello and I’m so sorry you’re going through this.” We had such a lovely chat (we are in there for the same reason) and went on our separate ways to appointments. Later on I saw her and her husband waiting for chemo, as I was about to do too so we sat together and talked some more. It was so nice to have a new waiting room friend. And she thought I was like 25 so I basically love her.

But for the most important part - my appointment brought some really good news!!!

In summery, my scans from last week look really great. Nothing is spreading and in fact things are shrinking, despite being on the more gentle chemo. I’m set to get another PET scan and my doc wants to present my case to the surgical board to see how close we are to operating and getting the rest of this god damn cancer out of me. 

Also, my white blood cell numbers are looking good so she wants me to skip Neulasta next round of chemo! 

Although I know that surgery could still be a long way off and things change on a dime, this is the most positive I’ve felt leaving an appointment so far. I feel incredibly hopeful, especially after October, which was consistently the shittiest I’ve felt since being diagnosed. 

So maybe it was a good thing I had to come in today, but don’t tell my team I said that! FUCKING PUMPED! 

[katiescancerjourney]

Chemo, 11/17/21

Yesterday delivered a big blow. My PET scan from earlier in the week lit up for the first time in my liver and also in a new spot, my sacrum. Now, the possibility of cancer spreading to my bones is on the table. 

But the reality is, we don’t know for certain and we won’t any time soon. One thing I’m learning is there are many tests and labs and scans that need to be done in order to see the whole picture and evaluate cancer. There is no end all be all test and there isn’t any certainty unless you cut someone open and perform a biopsy, which is not safe to do again and again. So, we just don’t know.

I think being positive is not about solely considering the best outcome or being blind to harsh realities, but to look at every possibility on the table and give them all equal weight. To not focus on the worst case scenario when there is a world in which the best case scenario also has a chance. Right now, there are tons of scenarios on the table and I’ve taken a look at them all and now it’s time to let them go till my next appointment in 2 weeks.

Chelsea had a great thought as well, that maybe this was the push I needed to start a new harsh chemo, that my doctor and I both needed a reason and this new chemo is going to hulk the fuck out in my body and kick cancer in the dick.

So even though yesterday was really scary and really sad and I hated going back to tougher chemo, I’m still deeply hopeful, always hopeful.

[katiescancerjourney]

Struggling, First MRI and PET Scans

To be frank, I’ve had a very tough couple of days. I’ve been feeling a ton of emotions ranging from anxiety of not knowing what’s next, to shock that this is my life now and how I still sometimes can’t believe this has happened to me.

On Saturday I went to a golf tournament with my cousin Steven and had a great day. I’m basically obsessed with Steven and love all of his (and my) friends. I played with my team, ate burgers and dogs, followed Steven’s team around, chatted with wonderful people, even won an air fryer! It was awesome! But unfortunately sometimes really fun days can be painful reminders of my situation.

I fell off a golf cart. I was riding on the back (as were tons of people) following the last teams around the course when my cart took a right turn and I flew off and barrel rolled across the fairway. I laid there on my back thinking “omg is my pump ok, is my abdomen ok, is my port ok.” They were all fine, I was fine. I started laughing out of embarrassment more than anything and went about the rest of the tournament. However, this did shake me up a lot. It was a big reminder that I can’t do dumb shit like that anymore and that I’m so much more fragile than the average person my age.

Everyone in my life drinks. It is a huge component of hanging out in my friend and family circles, and I am all about it! Have fun! Get lit! Enjoy yourselves!!! It’s just a reality that it can make me feel super left out. I get bored easier, I’m not getting energized by booze and the rowdiness that booze can bring, and at a certain point, it’s just best for me to go home. 

Let me say that everyone in my life has been amazing and I love getting invited to things. I don’t want anything to change and I certainly don’t want anyone to do anything differently on my account, it’s just the unfortunate truth that highs are often followed by lows. I wonder sometimes if I’m jealous? If I struggle when I leave a group of people because I wish I was healthy like them? Still unsure. What I am sure of is that I left the tournament and cried in the shower for an hour, then on the couch off an on for hours after that. Then off and on the whole next day. 

On Monday I had my first MRI and PET scans. It was definitely a much longer, harder day than I thought it would be. I left my apartment at 11:45am and got back at 7:15pm. I was injected with fluids and dyes, had to drink different fluids and dyes, had to wait in waiting rooms, then wait for dyes to spread everywhere, not to mention each scan took 40+ minutes of laying perfectly still. All the while I was fucking starving because I had to fast all day. Then, my guess is the contrast dye I drank messed with my stomach because after I left the hospital I had to find a random bathroom on the streets of NYC 2 separate times, thinking I wasn’t going to make it. Bless the sweet woman who let me use the bathroom in her pizza shop. Like thanks world, thats exactly what I needed on my way home after that a long day like that. 

I think the biggest part of my emotional weariness the last few days is feeling like an easier chapter of my cancer book is ending and a harder chapter is beginning. I had a really good few months, taking advantage of the gentler 5FU and making lots of fun plans. Now, with new scans will come new information and potential new treatment plans. I’m absolutely ready to take on whatever is coming but I will miss my 5FU summer.

Hopefully tomorrow’s appointments will bring clarity around what’s next and give me some peace.